Today was a preschool day, and I felt like I owed it to Jakob to get him there. I'm so glad I did. We made it just in time, before class started, and I had a chance to fill his teachers in on Ellie's situation. They were so empathetic, and nice about it all that I started crying. Sigh, I've reached that finnicky point of having dealt with too much to keep it in any longer.
Jakob wanted to bring the two musical donkeys we have as show and tell. One is his, one is Ellie's. He insisted on bringing Ellie's. "I want to tell my friends that Ellie is at Children's Hospital".
I managed to get out of the classroom before he saw me crying, and walked right into the open arms of a very good friend. She talked me through things, and soon I pulled myself back together. I'm so, so lucky to have the friends I have.
I went for coffee with another friend, and soon it was time to pick Jakob up again. He talked, and talked, and talked about things he did at school. He was in such a great mood. We went home, had lunch, and visited with Jason for a bit. I made Jakob a batch of the best play dough* then the two of us went to see our Ellie.
At the hospital, Jakob and I made a little side trip to the Foundation's office to drop of the rest of our donations towards Ellie's NICU baby tile. We raised $1200!! Our friends and family are so very generous, and we are really excited to have been able to give back to the hospital.
Ellie woke up as soon as she heard my voice. She was so happy to see me, and it hurt to know she missed me so much. Throwing salt into that wound, an insensitive (although I'm pretty sure it wasn't meant to be malacious) nurse, told me "She's been waiting all day for you". Another big sigh.
I fed her, changed her, talked to her. Jakob played with his play dough, blew bubbles for Ellie, watched tv. We were there for most of the afternoon, until close to 5, when I was supposed to meet my parents. With a heavy heart, I told Ellie I would come back to see her before I went home.
We had dinner with my parents, went to an appointment together, and by that point it was already 7:30pm. I wasn't sure what to do, my Mommy Guilt was killing me, and so I listened to my mother, who told me to go see her for just half an hour. Jakob was happy to go see her again, you wouldn't believe what an angel he is when we're there with Ellie. He loves her so, so much, he will do anything (including being very quiet for several hours) if it means being able to stay with her. He always cries when we leave her.
I am so glad we went, she was wide awake, and incredibly talkative. She is currently working on "b's" and attempting raspberries. I need to video her sounds, because chances are good they're going to disappear with the trach. That sucks.
I've been reading about g-tubes, and I am not convinced that is the right way to go with Ellie. I don't argue with the trach placement, I think that's a good thing. The g-tube, though, we worked SO hard with Ellie to get her properly oral feeding, I don't want to lose all that progress. Although it would mean going upnder twice, and two separate surgeries, I am going to ask that they at least give her the chance to try bottle feeding with the trach. She has the energy to oral feed, her suck is good. I can't see a reason to take that away from her, and to increase the likelihood of feeding difficulties later on. I hope they will be open and reasonable when it comes to that. If she can't do it, she can always get the g-tube later.
Tomorrow I'm meeting a friend for coffee at Children's, then on to my mom's birthday lunch. I think I might move Ellie's crib back into her room over the weekend. It's hard having a constant reminder that she isn't here at home with us. And, when she does eventually come home, we will have a night nurse, who probably doesn't want to watch Jason and I sleep...
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